Recently diagnosed with Cholangiocarcinoma

Discussion Board Forums Introductions! Recently diagnosed with Cholangiocarcinoma

Viewing 8 posts - 1 through 8 (of 8 total)
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  • #97577
    hercules
    Moderator

    Pooh, first big hooray for becoming operable. It does happen, and I also was comfortable with my surgeon

    and his plan, and I did not seek a second opinion, this can go well so try to remain positive and hopeful, ( your case and response to chemo has surprised the doctors already)  so it seems the positive energy is with you already, good luck, Pat

    #97571
    middlesister1
    Moderator

    Hi Pooh,

    If you are with a doctor who is experienced with CC and they are able to operate, I would also feel ok with not getting a second opinion.  As Mary said, over the years we have seen many getting multiple opinions in the hope of surgery or alternative treatments, who are alive today because they found a skilled surgeon who could perform the surgery.  Yourre already there.

    Best wishes for a successful surgery-

    Catherine

    #97562
    jpmski
    Participant

    Pooh,

    That’s terrific.  Congrats.

    Do whatever you have to do to have that surgery.

     

    Joe

    #97561
    bglass
    Moderator

    Hi Pooh,

    This is great, great news.

    You asked about a second opinion.  Whether to seek one is a personal decision.  Generally patients who are borderline operable may seek multiple surgical opinions to explore whether a more experienced or more specialized surgeon might see the liver resection as feasible.  In your case you have found a surgeon you trust who sees a definite surgical path to removing your cancer.

    Resection is a major surgery, so a lot will be done to be sure it is safe.  You may be asked to have some tests to be sure you are in sufficiently good health for the surgery, e.g., a stress test of your heart.  The surgeon will use your scans and modeling of your liver to ensure your liver function is not impaired by the surgery.  Frequently, as a first step during the surgery,  surgeons take a laparoscopic look at your liver to doublecheck the surgery is feasible and to finalize plans for the surgical procedure.  The liver is the one organ of the body that regenerates, so the amount removed in the operation does grow back.  The regeneration process is surprisingly quick, within a few months.

    While losing 60% of your liver sounds huge (my resection also took 60%), in fact, up to 70+ percent can be safely removed.  The amount of one’s liver that can be safely removed depends on a number of factors that the surgeon will evaluate in making a surgical plan.

    In my own case, in the days before my surgery, my parked car was damaged in a hit and run and my furnace died and had to be replaced.  I remember being on the phone with my insurer while on the gurney in the pre-surgical suite.  Looking back, while not something I’d wish for, rushing to get these problems fixed kept me from thinking too much about the surgery.  I also embarked on cleaning my entire house which was another good distraction.  So my advice to anyone facing a big surgery would be to keep yourself busy and distracted in the weeks prior.

    Please keep us posted.

    Regards, Mary

    #97559
    Pooh
    Participant

    Hello Everyone,

    I received very promising news last Wednesday. After 4 months of chemo (8 rounds), my tumor on the right posterior hepatic lobe shrunk from 2.3cm to 1.6cm, and is no longer compressing the portal vein.  Further, the largest lymph node now only measures 1cm, previously 2.9cm.  These were the only two areas of concern.  What was inoperable 4 months ago is now operable.  Our oncologist was amazed at the response.  The surgical oncologist met with us the next day.  He stated the entire right lobe would be resected and lymph nodes removed.  Everything is on the right side with no further metastasis.  I would lose 60% of my liver.

    I’m very comfortable with the surgeon and oncologist.  Also, I have so much local support with family and friends.  I do not want to go anywhere for a second opinion (as my husband keeps wanting).  Should I be concerned with the proposed resection of the entire right lobe?  Any thoughts would be greatly appreciated.

    Pooh

    #97278
    positivity
    Participant

    Hello,

    Thank you for joining our forum.  You will find so much information and the most important thing is to become knowledgeable.  Learn about all your options and read about other patient’s experiences.  It takes courage to participate and you are in the right place for support.  Please ask questions to medical providers and always be clear of what is expected.  Symptom management is crucial from the beginning and get support right away.  Do activities that are nurturing during this difficult time, whatever that may be for you.  I hope for the best on your journey, and keep us updated.

    #97275
    bglass
    Moderator

    Hi Pooh,

    Welcome to our community.  I am sorry to hear you were diagnosed with cholangiocarcinoma, and hope your chemotherapy treatments are doing their job without too many side effects.

    Please, if you have not already done so, take a look at the many patient resources on the Foundation website.

    I hope you have found medical providers with experience with our rare cancer.  Upon diagnosis, given the complexity of this cancer, patient cases are often reviewed by a multidisciplinary medical team, including not just an oncologist but also a surgeon, radiologist and possibly other specialists — this sort of team review is called a tumor board in the major cancer hospitals.

    Yes, the online material about cholangiocarcinoma can be daunting, but there are now more treatment options for us, with a number of new drugs being tested through clinical trials.  Medical research on cancer right now seems to be evolving rapidly.

    Please keep us posted on how you are doing, and if you have questions, you may be able to find other, similar experiences among colleagues here.

    Regards, Mary

     

    #97274
    Pooh
    Participant

    Hello Everyone,

    I’m 52 years old female and was diagnosed with stage 3 cholangiocarcinoma in April.  I’m on my 3rd round of chemo.  Hoping the tumor will shrink enough to operate on.

    Of course I’m scared to death, I really haven’t seen any positive out looks when I do internet searches.

    Pooh

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